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Coronavirus (COVID-19) and epilepsy

Scroll down for the answers to frequently asked questions on Epilepsy and COVID-19

Coronavirus FAQs

There are currently no shortages of epilepsy drugs due to coronavirus. Check our Drugwatch page for the latest updates.

Drugwatch

Our forum is very active at the moment with lots of people helping each other with emotional support and practical tips

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Last reviewed 3 April 2020

I have epilepsy. Do I need to stay at home?

The UK government has told everyone, regardless of age or health condition, to stay at home. You should only go outside for food, health reasons or work (but only if you cannot work from home).

Does having epilepsy put me at increased risk from coronavirus?

At the moment, there is no evidence that having epilepsy alone makes people more likely to catch coronavirus or have more severe symptoms. For most people, coronavirus causes mild symptoms, and they recover quickly after a few days.

Guidance from the Association of British Neurologists says that people with mild to moderate epilepsy, with no breathing or swallowing difficulties, are unlikely to be at increased risk from coronavirus.

However, epilepsy is a very varied condition. Some people with epilepsy have other conditions alongside their epilepsy, which may put them at increased risk.

I’ve read that people with underlying chronic neurological conditions are more vulnerable. Does that mean epilepsy?

Previous guidance from Public Health England said that people with chronic neurological conditions are at increased risk from coronavirus. Although epilepsy is a chronic neurological condition, the government guidance was based on who is eligible for the flu jab on medical grounds. Most people with epilepsy, who have no other complications, are not eligible for the flu jab.

The Association of British Neurologists has published guidance on which neurological conditions are likely to put people at increased risk from coronavirus. This guidance says that people with mild to moderate epilepsy, with no breathing or swallowing difficulties, are unlikely to be at increased risk.

The government’s guidance on coronavirus has changed rapidly. The government now says everyone should stay at home, regardless of age or medical condition.

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If I catch coronavirus could it trigger a seizure?

Some people with epilepsy say they are more likely to have a seizure when they are unwell, particularly if they have an illness with a high temperature (fever). Fever is a symptom of coronavirus, so it’s possible this could trigger seizures for some people with epilepsy.

The best thing you can do to protect yourself from having a seizure is to keep taking your epilepsy medicine as usual throughout any illness. The NHS advises taking paracetamol to help with the symptoms of coronavirus including fever. Paracetamol is safe for most people with epilepsy, but check with your pharmacist that it doesn't interact with your epilepsy medicine.

For most people with epilepsy, a seizure is not a medical emergency and does not need hospital treatment. However, if you are at risk of status epilepticus, make sure you have an up-to-date emergency care plan from your epilepsy specialist. This should tell you and the people around you what to do if you have a seizure and when to call an ambulance.

The NHS website has advice about what to do if you think you might have coronavirus. This is being updated frequently.

I’m worried about catching coronavirus at work but my employer says I have to go in. What can I do?

The government says employers must help people to work from home where possible. If you cannot work from home, your employer may be able to insist you go in, but they should follow government guidance to limit the spread of coronavirus at work. We have asked the government for more information on people’s rights if they feel they are vulnerable but are being forced to go into work. We will update this page when we know more.

ACAS has more information about coronavirus and work on their website.

Do epilepsy medicines stop the immune system working well?

Standard medicines used to treat seizures, known as anti-epileptic drugs, do not suppress the immune system.

A small number of people who have epilepsy as part of a syndrome or other medical condition, may be prescribed medicines that can weaken the immune system. These include steroids and everolimus, a medicine taken by some people with tuberous sclerosis complex. If you are taking these medicines, speak to your doctor for advice.

I’ve heard about shielding for extremely vulnerable people. What does this mean?

The NHS has written to people it believes are extremely vulnerable from coronavirus, advising them to stay home and avoid all face-to-face contact for at least 12 weeks. The extremely vulnerable group includes people with some types of cancer, people who have had solid organ transplants, and people with severe respiratory conditions.

Will the situation with coronavirus lead to shortages of my epilepsy medicine?

The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. We don’t currently know of any coronavirus-related drug shortages.  If we find out about any shortages of epilepsy medicines, we will post these on our Drugwatch webpage.

Pharmacies are still open, but many have changed their opening hours to help them manage demand. Check with your local pharmacy to find out their opening hours before making a journey.

The Royal Pharmaceutical Society had issued advice on how to help your pharmacy to help you.

My child has epilepsy. Are they at increased risk?

If your child has epilepsy alone and no other health conditions then they are unlikely to be at increased risk from coronavirus. In general, children appear to be less severely affected by coronavirus than adults. But if your child has complex epilepsy or other conditions alongside their epilepsy, you may wish to ask their doctor or epilepsy nurse for advice.

What do I need to know about self-isolation?

You’ll need to stay at home (self-isolate) if you or someone you live with has symptoms of coronavirus.

The NHS has issued stay-at-home advice including how long to stay home for. In addition, if you have epilepsy it’s a good idea to think about:

How to get your medicine

It’s important to plan in advance how you would get your medicines in case you need to self-isolate. This could be getting a friend or family member to collect your prescriptions for you. Or you could make arrangements for your pharmacy to deliver your medicines to your home. You may wish to check with them now that they offer this service, and how to sign up to it. If you usually collect your prescriptions from your doctor's surgery, you could ask if they can be sent electronically to a pharmacy of your choice instead.

Keeping in touch

If you live alone, have a plan to keep in regular contact with friends, family members or neighbours while self-isolating. You could ask them to contact you regularly by phone or text to check you are ok. This is especially important if you have uncontrolled seizures.

Look after your emotional wellbeing

You may be feeling anxious about coronavirus or your epilepsy. Our information on wellbeing may help. You can also find information about looking after your wellbeing and coping with anxiety related to coronavirus from Mind and Anxiety UK.

How can I protect myself from coronavirus?

Follow NHS advice to avoid catching or spreading coronavirus.

Coronavirus - our support for you

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F161.08

Epilepsy Action would like to thank Dr Rhys Thomas, Honorary Consultant in Epilepsy and Intermediate Clinical Fellow at Newcastle upon Tyne Hospitals NHS Foundation Trust, for his contribution to this information.

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